Should 'Ashley X' Be At Center Of Community Living Debate?By
Dave Reynolds, Inclusion Daily ExpressMarch 23, 2007

SPOKANE,
WASHINGTON & ISTANBUL, TURKEY--As most of you know, I am a strong advocate
for community living. I believe that the only way people with disabilities have
any chance of experiencing freedom and a decent quality of life is to live in
their own homes, outside of institutions.

That's why I started Inclusion Daily Express in the first place.

Having said that, I've been a bit worried lately about our movement's
use of 9-year-old "Ashley X" to further our cause.

During the first week of this year, an anonymous Seattle couple launched
a website to promote the fact that they had doctors give their daughter massive
doses of estrogen while surgeons removed her uterus and breast tissue -- to
keep her from growing.

They said they did not want the girl, who has developmental
disabilities, to go through the discomfort associated with puberty, and that
they wanted to have her at home -- to carry and to cuddle -- for as long as
possible.

Many US and UK disability rights advocates condemned the parents of
"Ashley X", saying the procedure amounted to mutilation and violated her human
rights.

I agree.

Some added that an increase in funding for community residential
programs would keep other parents of children with disabilities from turning to
the "Ashley Treatment".

This might indeed be true.

Frankly, however, I haven't been able to make that link between
community supports and Ashley's parents. I don't think one has much to do with
the other.

For one thing, I found nothing in statements by Ashley's parents to
suggest that an increase in community supports would have kept them from
surgically changing their daughter to fit what they wanted her to be -- their
eternal "Pillow Angel". To the contrary, they said that they had tried in-home
services but were not happy with them. Not that their satisfaction with the
services would have mattered; even if they had the best in-home supports for
Ashley, they still would have chosen their radical treatment.

"We would never turn the care of Ashley over to strangers even if she
had grown tall and heavy," they wrote.

For another thing, the parents have said over and over that they chose
the 'attenuation treatment' because they did not want Ashley to go to an
institution. So, as strange as this may sound, if these parents are being
honest with us, they consider themselves to be community advocates.

They think they're on our side.

Yes, we do need to push, at every opportunity, for more and better
in-home supports for people with disabilities of all ages.

But using this case to justify our position puts us on rather shaky
ground.

One reason is that the same young girl can be -- and is being -- used to
justify the opposite position.

On Friday, Turkey's Zaman newspaper reported that a Turkish family is
considering the same treatment for a 13-year-old by who has cerebral palsy.

Füsun Evren said she was looking for a doctor to stunt the growth
of her 42-pound son, Umut Mert, by having him castrated.

"I want him to stay as my little Mert," she said.

Sound familiar?

While one university professor pointed out that castration violates all
religions, including Islam, the head of the Turkish Association for the
Disabled, Zülfikar Akar, said: "These situations happen because care
centers don't offer long-term care for people with disabilities."